Why puberty education matters for Malaysian children with Down syndrome

Vocational training skills matter for children with Down syndrome because they can help them move towards independence. Photo: Segi University

It is crucial for parents of children with Down syndrome (DS) to begin educating their kids about puberty at an early age. This proactive approach ensures that special needs children are well-prepared for the physical and emotional changes that come with adolescence, says consultant developmental paediatrician Dr Rajini Sarvananthan.

“Children with DS may not always follow the same stages of development as other girls. For example, menses starts when breast development is more advanced in most girls, but for girls with DS, breast development may be later. So it is important to have conversations about puberty by around eight years old or earlier if parents notice any physical changes like body odour, hair growth and early breast development,” said Dr Rajini during Alumni Kiwanis Down Syndrome Foundation’s (AKDSF) talk, “Supporting Young People with Down Syndrome through Puberty and Adolescence”, in Petaling Jaya, Selangor, recently.

It is equally important to teach children with DS about puberty and appropriate boundaries as these children may be more vulnerable to exploitation due to their trusting nature and potential difficulty in understanding appropriate boundaries.

In the study, “Global estimates of violence against children with disabilities”, published in The Lancet Child & Adolescent Health Journal in 2022, it was discovered that 31.7% of children with disabilities have encountered violence.

Educating children with Down syndrome about sexual abuse empowers them to recognise inappropriate behaviour and assert boundaries. Photo: Firas Fathullah

They are also twice as likely as children without disabilities to endure neglect, as well as sexual, physical or mental abuse.

During the talk, Dr Rajini emphasised the importance of parents teaching children appropriate social interactions from a young age.

This includes understanding appropriate and inappropriate behaviours, distinguishing between private and public behaviours, recognising safe and unsafe touch, and learning how to interact with different people in their lives.

“These conversations should start as young as the toddler years and gradually continue. And get children to be independent with their self care from a young age so that teaching them to manage periods, wet dreams or erections won’t be so challenging.

“We must also talk to them about the opposite sex and the physical and emotional changes they go through, and finally we must talk about sexual intercourse and what it is so they can protect themselves when necessary.

“The challenge is often that their social emotional maturity is often lagging behind and they may take time to understand what is happening, and that is also very much dependent on how we prepare them.”

‘Children with special needs must be adequately prepared for the physical and emotional changes of adolescence,’ says Dr Rajini. Photo: Dr Rajini SarvananthanShe added that puberty is a challenging time for both parents and children, and in our Asian culture, it seems to be a taboo subject.

“No one wants to talk to their children about it. Neurotypical children often learn from other sources including siblings, peers, social media and print media. But for children with special needs, they often don’t have access or may not understand what their peers understand.”

Dr Rajini added that parents need to start early by getting their children to be independent with self care skills, find how best their children learn new concepts and share this with educators.

“Work on their social interaction skills, how they understand relationships and build awareness of how their bodies and emotions may change and how to cope with these changes. Work on their self esteem and how they should say no to inappropriate touching and social advances. Start discussions early and support them until they are confident and able to assert for themselves.”

Lifelong connections

The talk was among many activities organised by AKDSF, founded in 2023, which comprises 60 children who were part of the Kiwanis Down Syndrome Foundation (KDSF).

KDSF is a non-profit foundation that operates centres across the country. It focuses on early intervention and special needs education of DS children between two months and six years old.

AKDSF president Joyce Teoh explained the alumni serves as a supportive environment where former KDSF students can connect, share experiences and continue their educational and social development.

“Among the alumni’s objectives is to help teenagers and adults with DS to obtain relevant job training they need to develop skills for them to live independently and productively. We also aim to act as the main advocacy platform for DS children, and organise social and sporting platforms to enrich the lives of these children with special needs,” said Teoh, who has a 16-year-old daughter with DS.

Football coach Sunny Shalesh (second from right) believes that teaching boys with Down syndrome how to play football enhances their physical abilities and helps them develop essential life skills. Photo: Nurlina Jumali

In March, the alumni organised a talk on body boundaries. Teoh explained that such talks are important to help them understand appropriate behaviours, recognise boundaries, and protect themselves from potential abuse or exploitation.

“Teaching children with DS about body boundaries is crucial. It empowers them to assert their needs, fosters positive social interactions, and prepares them for the changes of puberty. Ultimately, it promotes safety, empowerment and inclusion, enabling them to lead fulfilling lives as active members of their communities.”

Since the start of the year, AKDSF has organised nature journalling classes, art tours and futsal lessons for its members. They’ve also offered talks on money management, medical insurance and estate planning for children with DS.

Additionally, a baking workshop has been arranged to impart skills to the kids. There is also the Inscribed in Hearts programme to teach Muslim members to learn to read the Quran and be able to apply the fundamentals of the religion in their daily lives.